Sunday, February 14, 2016

Valentine's relapse


Feb relapse
Good Morning Miss Stay-Puff, looks like you've relapsed again.

I can't believe I have neglected posting updates.  Here is a quick run-down.  Summer went great, School is going well, she continues to be a happy, cheerful girl.  She is excited because having a reprieve from prednisone has given her a chance to grow - now claiming a full 5 feet - Yay!

Miracles happen: Her medication (tacrolimus) was re-classified as preventative, which means it is covered in full by the insurance, pre-deductible.

Dec Pre-relapse
November, doing well so the Dr reduced her tacro because she had made it almost a full year without a relapse.  Guess we may have been a bit premature though, because at the end of December she started spilling protein again.  Called the clinic and she was put on the prednisone relapse protocol.

Unfortunately, right after completely weening off prednisone, she started spilling protein again, so she's right back on prednisone.  We'll visit the Dr in March and re-evaluate if her tacro needs to be raised, or it there are new triggers to consider.  Both relapses coincided with her menstral cycle (a new factor).  Triggers or coincidental coincidance?

Have a Happy New Year!

2 comments:

Unknown said...

Hi. Amazing blog and story.Thank you for sharing. I know you blog is a valuable source of support for many families with NS children, like mine. My doctor is also recommending Tacro. May I ask what are side effects you found with your daughter? Thanks, Harold

McKinnon said...

She has not experienced any significant side effects from the tacro. She has not experienced increased illness. The drs monitor her blood labs and so far do not have any concerns.